Wednesday, July 29, 2015

Rare Diseases International

The XLH Network, Inc. has always had a global focus, with members from all over the world. It's challenging, though, especially when it comes to fundraising and the lack of uniform international laws with respect to medical treatments and how those treatments are approved or paid for. We think it's worth dealing with those challenges, since the rareness of XLH means there are relatively few XLH patients, and we need our combined strength to make sure all patients have the most up-to-date information about XLH and access to the broadest support possible from other XLHers.

Other organizations tend to have a more limited geographic focus. NORD (National Organization for Rare Disorders,, for instance, solves the problem of too-small numbers by combining a wide variety of rare disorders and works on the issues that they have in common within the United States.

The Network is a long-time member of NORD and supportive of its work. In return, we benefit too. Anyone who is looking for information on XLH at NORD's website, can put that term into its search box, and will get contact information for the Network. That search also generates a page on Familial Hypophosphatemia that our SAB member, Thomas O. Carpenter, M.D. helped put together, with the basic information about XLH. You can find it here:

The only thing missing from NORD's excellent work until recently was that it was limited to addressing issues within the United States. In late May of this year, NORD expanded its reach by joining with EURORDIS (similar to NORD, but for Europe) and patient representatives from thirty countries to create Rare Diseases International (RDI). The mission of RDI is to "represent patients and families of all nationalities across all rare diseases. It will be the voice of all people living with a rare disease around the world today and will work to give visibility to rare diseases in the global health agenda." NORD will be working toward those common goals as the RDI representative for U.S. patients.

You can read the entire press release here:

You can read more about RDI (its vision, objectives, history, etc.) here:

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